I’d never thought about it. At least not much. Have you? About water?
Well – if you’re living in Ireland, you just about might, but, largely: you open the tap and out it flows. You put a glass under the tap, wait until it’s full. You take it up to your mouth. You drink it. No big deal.
Today it day 4 post-tracheostomy time.
Pádraig gave it a go. Just a few days ago he was trying small sips of water, first with a spoon, then in very small quantities from a glass. He’d managed, but with difficulty.
Today, he finished a glass of water. (There were a few drops left a the bottom, but we won’t worry about them…) What a first!
It is really amazing to see the difference that the removal of the cannula has made to his ability to swallow. He’s getting breakfast (some creamy things like thick yoghurts), lunch (a hot meal), and dinner (another hot meal). He’s not finishing any of them – but neither would I: the quantities are humongeous. But he’s is really digging in and eats maybe up to half on what is on offer – it also depends a bit on what is on offer:)
We are still staying with him all the time. Especially when we turn him from one side to another, he always needs some time to adjust to the change, and before he find his breathing pattern again. We are learning how to help him with that. It can take a few minutes, but so far he’s always found it. Once he’s settled down and we found the best position for his head, all is well. It’ll take time for him to really get back to ‘normal’ breathing but with his head control (very very slowly but) improving, his full trachea being used again for breathing in, and breathing out, after a year and a half, with his swallowing not being interfered with by this plastic tube next ‘door’ in his trachea, with improved tasting and smelling, with all of this, Pádraig is taking a huge step towards connecting with the world and all its wonders (that we take for granted far too often) again. The past few days have been so amazing: to see the progress he is making, but also to be in a completely strange place, getting meals delivered to the door, leaving the trays outside in the “Schleuse”, the small room between Pádraig’s room and the outside world, where you put on your masks and stuff, looking out the window into other windows, seeing the rain and the storm passing over and, sometimes, into this small square that separates his room, his window, from all the other rooms, the other windows, the other patient, of whom we see shadows behind orange-coloured curtains, only sometimes a face, a bit of the furniture, the same as in Pádraig’s room.
Today, we made a list of what we need to get to the new apartment over the next week to be able to get him going. It’s a lot, it’ll be an incredibly busy week, it’ll be exciting and busy and I feel tired already, even if I don’t think about it. But it’ll be brilliant and amazing. And there will be the operation on Monday, stitching up what is left of the hole in his neck.
And then -if all goes well, and there is no reason why it shouldn’t, Pádraig will be living with us again in just nine days… after more than a year and a half.
And just a year ago, he was here in the UKE too. But how different that is from where he is today!